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The American Chronic Pain Association estimates that over 116 Million people in the United States suffer from and are partially disabled by chronic pain. A lot of those are as a result of a work accident.
They are given a lower disability rating because they are not confined to a wheelchair or bed ridden. Even though their conditions are just as bad, they are given ratings as low as 5% because they do not fall under their conditions for rating.


According to the fifth edition of the American Medical Association (AMA) Guides, disability is defined as "an alteration of an individual's capacity to meet personal, social, or occupational demands because of an impairment."[2, 10] The WHO defines disability as an activity limitation that creates a difficulty in the performance, accomplishment, or completion of an activity in the manner or within the range considered normal for a human being. Difficulty encompasses all of the ways in which the performance of the activity may be affected.

Some people with Chronic pain are shut ins and cannot work due to gut wrenching pain 24/7.
Yet we are given a lower rating because of their guidelines!

Please tell them that you will not stand by and watch the over 116 million people in the United States be treated like second class citizens when they never asked for their Chronic Pain Disease or Condition.
We deserve a different, and more fair Chronic Pain Disability Scale, that will give people with Chronic Pain a Disability Rating that they deserve.

In the spirit of giving this holiday season, instead of purchasing a gift for the migraineur in your life please make a donation to the Migraine Research Foundation.

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It's been a few weeks since I've posted anything.  I have had a difficult time this month.  Not only has my migraines not gotten any better but I was diagnosed with having myofascial pain syndrome as well.  Isn't that great?!  I was devastated when I got the diagnosis.  How much more pain am I supposed to endure?  I can't even get the migraines under control.  How am I going to deal with this on top of it?  For a brief moment I thought that I found a doctor that would finally help me.  He was a pain management specialist and he offered treatments that my neurologist would never give me.  The first was a C2 stellate ganglion block where he would numb the nerve itself and inject steroids.  The procedure is somewhat invasive where it's done in a treatment room under flouroscopic guidance (x-ray).  I had a migraine that was an 8/10 that day.  After the nerve block my neck was stiff and I couldn't turn it very well.  I still had the migraine.  In fact, it grew worse over the course of the day into the next.  I was in so much pain I swore the it was off the charts.  Over the following three weeks until my next follow-up, I still had daily migraines.  Nothing really changed. 

The scariest migraine attack that I have ever suffered was last summer.  I have been going through a tough time emotionally and my depression was getting the best of me.  I was tired of having all the responsibilities of taking care of the house, kids, and my husband all while being in pain daily.  On that particular Thursday, my husband decided that it was a good day to give a reprieve.  He put me up in a nice hotel for the night.  He was off for the next two days so the kids were covered.  I already had a migraine that was a 7/10 from crying most of the morning.  But I was looking forward to the peace and quiet I was soon to enjoy.


After picking up my rescue medications, I checked into my room.  I had all that I needed for food and drink thanks to the pantry in the lobby (and to hubby for getting it for me).  After everyone left I settled in and began to de-stress, or at least try to.  By that evening, however, my migraine had reached a 10 and my meds weren't working.  I had a horrible night and couldn't enjoy my one free night.  So I decided to stay another night hoping that the attack would cease so that I could finally enjoy my freedom.


As the day wore on, the migraine became more and more severe.  My husband and kids were coming with dinner so that we could eat together.  By the time they got to the hotel with the food, I was in so much pain that death seemed like welcome relief.  I most certainly surpassed 10/10 on the pain scale and was nearing 15.  Slowly, my left arm began to go numb followed by my hand, fingers, leg and foot.  I was getting very scared.  I've never experienced numbness during an attack before.  Was I having a stroke?  It isn't far fetched to think so since migraineurs are at a higher risk for stroke.


My husband and kids were all worried for me so he called the advice nurse and got me an appointment with urgent care.  It's at least thirty minutes from us so that was the longest car ride ever.  The numbness was getting worse and I was getting more scared.  It was really freaking me out.  All I could do was cry.  My sweet daughter rubbed my head the whole way to try and ease my pain.  When we arrived I could barely walk the pain was so unbearable and I couldn't really feel my left side.  As we waited to be called, a woman with a screaming toddler sat across from us.  As if the fluorescent lighting weren't enough, the loud cries from that kid made it feel like grenades were going off in my head.  We were finally called back after what felt like an eternity, which was only five minutes.  I was taken to the triage room and was helped onto the bed.  The nurse began asking me questions that I don't remember.  I was eventually wheeled to an exam room and seen by the doctor.  We went through the usual 'what do you take and when', blah, blah, blah.  She went through my extensive medication history and decided that since I've been on everything for me to have an MRI done and see a new neurologist.  I was given a cocktail of Toradol, Demerol, and Phenergan.  After ten or fifteen minutes, the numbness was wearing off and the pain began subsiding. I was finally getting relief.


After about twenty minutes I was cleared to go home.  I was groggy and hungry from the narcotics and also in a state of shock from the craziness of the night.  Of all the 25 years of having migraine, this attack was the most severe and the scariest.  I was dumbfounded by the numbness I was feeling.  What kind of migraine was this and what else could be going on?  It all felt surreal to me.  We finally got back to the hotel after midnight.  My husband left my daughter to stay with me to keep an eye on me during the night.  He and the boys left and I ate a little and went straight to sleep.  I woke up the next morning a little groggy and my pain was at a 2-3/10.  My two days of freedom and no stress turned into two days of horrific pain.  Needless to say the goal of de-stressing wasn't accomplished.


A few weeks later I had the MRI which came back clean as I expected.  The neurologist recommended alternative treatments such as acupuncture, chronic pain management, and Botox injections.  Out of the three, only the chronic pain management classes has helped.  I'm still trying to find a treatment plan that will work.  Thankfully, I haven't had an attack like that one since but I did have one that landed me in the hospital for three days.  I still have daily chronic migraine and I'm still trying to push through.  I experience many days of excruciating pain, all of which feel worse that the one before.  But I soldier on trying to stay as positive as humanly possible for someone in my position.  I never want to experience that night again and through the grace of God nothing serious was wrong.  I'm grateful for that and for each day thereafter, even if they bring me pain.

The working defintion of WILLINGNESS according to Iyanla is:

The working definition of MEDITATION according to Iyanla is:

Today's principle is PRAYER.  Iyanla's working definition of Prayer is:

"PRAYER is a form of communion.  It is the method of communication between man and the Divine.  An inward exploration undertaken to cleanse and perfect consciousness.  An act of reaching in to the Higher Self."

Today's principle is TRUST.  Iyanla's working definition of TRUST:

Today's principle is TRUTH.  Iyanla's working definition of TRUTH:

1. God is Life.  God is Spirit.  God is Mind.  God is the only power that controls life, spirit, and mind.
2. God is within you and every living thing.  Translated this means that everything living is a unique representation of God's identity - mind, spirit, and life.
3. God does not punish us.  We punish ourselves with guilt, shame, and fear when we choose not to act in concert with our inherently divine nature.
4. There is a Divine Order to everything in life.  It is for this reason that exactly where you are at any given time in life is exactly where you should be according to the Divine unfolding in your consciousness and life.

I have been given a wonderful opportunity to open myself up and find my soul.  For over a year, with the last five months being the worst, I have been having chronic daily migraine with many of the so disabling that breathing was a challenge.  The constant pain was wearing me down to almost nothing.  I was turning into a frail and brittle version of myself, beaten down and overtaken by pain.  It was seriously affecting my self-esteem and confidence in ever feeling happy again in my life.  


As I was venting during one of my counseling sessions, my counselor Kelley suggested a book to me with daily exercises.  This book was Iyanla Vanzant's One Day My Soul Just Opened Up: 40 Days and 40 Nights Toward Spiritual Strength and Personal Growth.  I welcomed it with open arms.  Mostly because I just LOVE Iyanla and her no nonsense way about speaking the truth most people spend their life avoiding.  She is very inspirational to me and if what she says in this book is going to help pull me out of the deep, dark hole of guilt, shame and hopelessness that I'm in now, then I'm going all the way in.


I decided to document what I learn as I go through each of the 40 days and nights and hopefully what I learn about myself can help inspire others who are living lives of chronic pain and illness to do the same.  Despair does not have to be what we have accepted as fate but instead opening up and rising above the pain.  Each day I'll share the answers to the questions for each new principle learned and document my journey towards spiritual strength and personal growth.

• You develop a heightened response to pain signals
• The part of your brain that suppresses pain signals isn't working properly

• Anxiety
• Depression
• Sleep disturbances
• Obesity
• Snoring
• Overuse of caffeine
• Overuse of pain medications
• Regular use of positions that cause strain on the head or neck

According to the American Academy of Pain Medicine respondents of a National Institute of Health Statistics survey indicated that low back pain was the most common (27%), followed by severe headache or migraine pain (15%), neck pain (15%) and facial ache or pain (4%).  Pain affects more Americans than diabetes, heart disease and cancer combined, as shown in the chart below:

• Women were more likely to experience pain (in the form of migraines, neck pain, lower back pain, or face or jaw pain) than men. Women were twice as likely to experience migraines or severe headaches, or pain in the face or jaw, than men.
• The percentage of person experiencing migraines or severe headaches was inversely related to age. Twenty percent adults aged 18-44 years experienced a migraine or severe headache in the 3 months prior to the interview compared with 15% of adults aged 45-64, 7% of adults aged 65-74, and 6% of adults aged 75 and over.
• Adults aged 18-44 years were less likely to have experienced pain in the lower back during the 3 months prior to the interview compared with older adults.
• When results are considered by singe race without regard to ethnicity, Asian adults were less likely to have pain in the lower back compared to white adults, black adults, and American Indian or Alaska Native (AIAN) adults.
• Adults with a bachelor’s degree or higher were less likely to have migraine headaches, neck pain, lower back pain, or pain in the face or jaw, compared to adults who did not graduate from high school.
• Adults in poor and near poor families were more likely to experience migraine headaches, neck pain, lower back pain, or pain in the face or jaw in the 3 months prior to the interview than were adults in families that were not poor.
• Among adults under age 65, those covered by Medicaid were more likely to have migraine headaches, neck pain, lower back pain, or pain the face or jaw than those with private insurance or those who were uninsured. Among adults aged 65 and over, those covered by Medicaid and Medicare were more likely to have migraine headaches, neck pain, lower back pain, or pain in the face or jaw than those with private insurance or only Medicare health care coverage.

As we enter into the second day of National Suicide Prevention Week (September 4 - September 10, 2011) I felt the need to readdress the subject of suicide in respect to migraine.  Today is a particularly hard day for me.  I have finally felt my spirit break last night by the ongoing daily pain that has a choke hold on my life.  I don't want to end my life but I'm so tired of it all.  All of the constant obstacles I encroach trying to get doctors to listen and realizing another failed treatment has taken its toll.  Why do I have to expend so much energy in order to feel better?  Why must I be my own advocate all of the time?  When will I come across people in the medical community that will stand up for me?  

A few months ago I watched a very touching documentary about patients in Oregon with terminal illnesses who have either decided to end their lives through assisted suicide or to battle through the illness until the bitter end.  As I sat and witnessed each person's story, I couldn't help but understand the decision to end a life of suffering.  I could totally relate.  No, I'm not a cancer patient or someone with failing organs or going through the ups and downs of a terminal illness.  


But I DO have a chronic illness.  One that brings me such insanely intense pain that each minute of it always feels like it's going to kill me.  When you begin to think that a gunshot to the head would be a welcome relief you know that the pain is BAD.  So when I think about my future, I'm very concerned that it will most definitely include 15 or more attacks a month like I have now.  How am I supposed to have a life or will I ever have one?  I've been somewhat obsessing about my life always being filled with pain.  I sit here now with a bag of ice on my head and incredibly nauseous and wishing for it all to go away.  


I'm not feeling very hopeful at this point since I just recently finished an intense round of prednisone to break the months long attack I was having and here I sit still in pain.  I wouldn't wish this on my worse enemy.  How can I look into my future and not see my present?  So, I don't see much difficulty if it came to it to choose to end life on my own terms.  When pain becomes the adjective that describes your life it becomes extremely difficult to find the hope between the small cracks that represent the often few pain-free moments.  I can honestly say that I do find comfort in that.  Maybe because it's a choice that I would have control over when this disease makes so many for me.  After many types of treatment, medications, ER and urgent care visits, doctors, diets, supplements, alternatives, and countless counseling sessions I already feel like enough is enough.  


I know that I should be hopeful for a treatment that will work; grateful for the life that I do have and appreciate the fact that I wake up every morning.  Yet, after so many months of disappointment I'm not feeling much of any of those things.  It's a very hard and stressful road that I travel along and the obstacles have been getting much more difficult to traverse.  I'm coming to a point where I don't want to jump the hurdles anymore.  I know depression has a hand in the way that I feel but my body is telling me it's tired.  It's whispering, "No more please.  I can't take much more."  It's all very cumbersome and I wish for myself that my future years will be much better than the ones I have struggled through so far.  For now, I'll continue to lay in my bed with my bag of ice and hope that tomorrow won't be as bad.

It's all about not giving up.  Every day a small part of me wants to throw in the towel.  I get so tired so often.  I doubt that anyone truly realizes how much stress Migraine disease puts my body under.  I get so exhausted that my mind literally shuts down and thinking becomes difficult.  There have been so many days where all I can do is cry because I've been through so much and have achieved such little progress.  When I have a severe migraine attack and I don't have any medicine that will properly take the pain away, I feel downright defeated.  All I want to do is give up and give in because I feel like there is no more fight left in me.  But I manage to push through and make it to another day.  Lately, I have been using my new approach to treatment as my motivator.  I'm not relying solely on the advice of my neurologist who could only push prescription after prescription until there were none left to try.  I decided to take matters into my own hands and try alternative treatments.  I fought to get a referral to see an acupuncturist which I got and I regularly get cranial sacral massages.  Both help ease the pain that I experience.  I'm on an anti-inflammation diet where I do not eat wheat, gluten, soy, dairy or cooked eggs.  I've noticed a change in how I feel physically.  I'm forced to eat more organic, natural and pure foods and my body has responded well to it.  I've even started to lose weight which is a good side effect.  At one point I was on Lyrica as a daily preventative and it caused me to gain 30 pounds.  It's been a struggle to lose it especially being bed ridden so often and unable to exert too much energy without getting a migraine in the process.  Now I feel like I can actually start an exercise regime.  I've been wanting to get back to doing my New York City Ballet Workout.  Ballet is the only form of exercise that I enjoy doing.  It doesn't feel like exercise to me.  I danced for 13 years and I miss it. By focusing on new things I'm not giving up.  Don't get me wrong, I still feel like doing so at least once a week but I have to remind myself that giving up means I don't get a better life and I deserve a better life.  So I'll continue to push on, even on the days that feel like they're from hell.  God doesn't put me through things that I can't handle and if I remember that then I'm okay.

We all have heard the saying, "Not tonight, I have a headache" before.  Every husband or boyfriend hates when we say it.  Many women use the "headache" as a scapegoat for sex when they're just not in the mood.  It's been over used to the point where it's become a joke.  But for the women who suffer from migraine disease who experience true headaches for days at a time, when we say "I have a headache" it's the truth.  Unlike the women who use headaches to not be intimate, we truly want to be close with our spouses or partners but the pain gets in the way.  Headaches give us a bad rap.

I know that for me, I feel so bad when I can't show my affection through intimacy because I've had a week long migraine.  Especially since my husband does all that he can to make me feel better despite his hectic schedule.  Many times I go ahead with it knowing that it will probably make me feel worse but why should he suffer?  It's a terrible predicament to be in.  We want to satisfy our partners not deprive them.  I often feel guilty that his wife has so many medical issues that interfere with our sex life.  I want to show him how much I love him but it isn't very easy when you have throbbing, stabbing pain in your head and feel so nauseated that you want to die.

I'm curious to see if there is anyone who feels the way that I do about this subject.  I've never seen or heard it talked about and it came to mind as I laid in bed last night in pain.  Like so many other things that migraine affects this is no exception.  We become very limited with this disease and it can alter many aspects of daily living.  There are many subjects that aren't approached when it comes to migraines so I thought I would open the door on this particular one.  Please chime in and let me know if this is a problem for you.  As for the women who say they have a headache when they really don't, do us a favor and just say "I'm not in the mood".

It's day five of this particular migraine attack.  As usual, I'm alone with the kids since my husband works midnights and sleeps during the day.  There are many times that I skipped going to the doctor or urgent care because it takes away from his much needed sleep.  I would go if there was someone else who could take me.  But there isn't.  We live in a different state than our families and neither side is close enough to "drop" by for a day or two.  So, days go by where the refrigerator is almost empty and the pantry is lacking of much needed staples.  The kids suffer because I can't always take them to the pool or to the park.  I need help but it just isn't there.  We live on a one income budget.  Although I get disability, it's barely enough to make a dent.  We could always use help when it comes to groceries, making meals, etc.  Thankfully the kids are old enough to take care of the chores.  It's just that when I'm out of commission due to the pain I don't really care to keep them in check.  I have other things on my mind like the nonstop pain I'm enduring.  My husband doesn't really cook, so he orders in food when I can't.  It makes me feel guilty that we have to spend money on take out because I'm not able to make dinner.  At least once a week I wish that my parents or his were just a few minutes away so that they can take the kids for a while or bring us a home cooked meal or pick up some groceries for us.  At our previous home I was at least able to order from Peapod for our groceries but it's not available here.  So, if I don't go shopping we don't always eat.


I'm not the kind of person to ask neighbors for help.  For one, all my life I had to deal with people saying that "it's just a headache" so I stopped trying to look for sympathy, empathy and help from those who weren't closest to me.  I also have too much pride, a trait that I got from my father, to ask for assistance.  The only person that I lean on really is my husband and I don't know what I would do without him.  I feel so bad because his job is really stressful and the shift he works reduces him to a zombie most days.  I just wish there was more I could do.  I so desperately want to put a "Help Wanted" sign in my window just so that I can stop feeling like I have to do everything despite my pain.  It would be nice to know that I don't have to worry about dinner because so and so is bringing some over or that someone will be dropping off some groceries.  On days like today, I really wish that I had that option.


I'm not very close to many of my neighbors since I spend most of my time in the house.  There are two that are very dear to me, but they have lives, children and jobs that keeps them busy so I can't get myself to ask them for any help.  I've never been comfortable doing that my entire life so it's pretty hard to do it now in my thirties.  I guess, since I had to rely on myself as a kid to deal with my migraines (I spent many, many nights home from school suffering alone while my parents were at work) I do the same now.  It's what I know and what I do best - just deal.  But I don't want to "deal" anymore.  I guess I'm starting to reach the point where I will have no choice but to reach out.  I'm pretty sure that my friends would be happy to help in any way that they can.  I feel so pitiful right now that it clouds my judgement.  I know that they don't feel sorry for me but I guess since I feel sorry for myself right now I can only assume others will to.


I feel like kicking myself sometimes for being the one kid growing up that had no problems living far away from my family.  I went all the way to Hawaii for college, met my husband and moved to his hometown of Buffalo which is eight hours from my hometown of Queens, NY and the closest we've been to either side of our family.  Then we moved down South.  We both are ambitious and aren't afraid to go where the Lord sees fit for us to be, but I feel that I sacrificed having my family near to us.  Hindsight is 20/20 but we're here now and no one is going to be moving next door to us anytime soon.


So I guess I'll be doing what I always do and just hang on until there is a break in the cycle.  I really do want to ask for help but I'm just not comfortable doing it.  I think because so many ignored my disease and whittled it down to just an ordinary headache, I approach it that way too.  I don't expect people to understand or want to help.  I probably need to adjust my thinking before I go seeking assistance.  But, at the moment I'm in this particular situation and like all the rest before it, it doesn't look very hopeful.  I'm in pain, my medications aren't working, I'm waiting to hear back from my neurologist and wishing things were different.  This is my life's story and it sucks pretty bad.

• Threatening to hurt or kill him or herself, or talking of wanting to hurt or kill him or herself; and/or,
• Looking for ways to kill him or herself by seeking access to firearms, available pills, or other means; and/or,
• Talking or writing about death, dying or suicide, when these actions are out of the ordinary.

• Increased SUBSTANCE (alcohol or drug) use
• No reason for living; no sense of PURPOSE in life
• ANXIETY, agitation, unable to sleep or sleeping all the time
• Feeling TRAPPED – like there’s no way out
• HOPELESSNESS
• WITHDRAWING from friends, family and society
• Rage, uncontrolled ANGER, seeking revenge
• Acting RECKLESS or engaging in risky activities, seemingly without thinking
• Dramatic MOOD change